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Having Trouble Accepting The Diagnosis
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15 posts in this topic

I am a brand new member, so hello everyone. Let me give a little background. And thank you in advance for any experience or advice you can offer.

I have had positive bloodwork for celiac disease. Earlier this month, I finally had an endoscopy. By just looking at my small intestines, my Dr said that she saw extensive damage, indicative of celiac disease. When the biopsy came back, it indicated Marsh 3B level damage. My Dr said she was very confident in saying that I have Celiac Disease. I started a gluten-free diet right away and have been very strict with it.

My problem is that I am having trouble accepting this diagnosis. For one thing, my symptoms had really calmed down 2 months before I had the endoscopy. I had just cut out gassy foods (onions, beans, bell peppers) and that seemed to help me a lot. So finding out I still have Celiac Disease without many symptoms is just really weird for me. I never seemed to notice reactions to gluten when I had eaten it (accept for intermitant bloating). I notice way more problems when I eat high-fat foods (like avocado and bacon) than when I ever ate gluten.

My only other symptom is that I have been 15 lb under my normal, healthy weight for 3 years now. I was always a good weight before and filled out my clothes nicely, but now all my jeans from college fall off my hips. I was also having a hyper-thyroid episode around the same time I lost this weight though. The thyroid problem and weight loss all happened after the birth of my second son. So if i do have celiac disease, I think it probably began around the same time my thyroid problem did, in response to the pregnancy.

So.... I am internally fighting this diagnosis. I keep wondering if my Marsh 3B damage could have just been caused by the other foods that I had trouble with? (gassy and high-fat). Or if if is at all possible to just have that amount of damage and NOT have celiac disease? My Dr did mention a few other very rare things that can cause that kind of damage but basically said that my chances of having any of those is pretty low. I am a 28 year old woman of irish ancestry already with a diagnosed autoimmune disease (Hashi's), so she said with that information combined with all of my tests done... it is fairly certain that i have celiac disease. But it just seems surreal to me. I still don't feel like I have it. I'm just looking for advice or anything. Thank you.

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The only other foods I've seen mentioned that can cause Celiac type GI damage are casein and soy. You could have intolerances to the foods you mentioned but I have not seen them mentioned as foods that cause damage to the intestines.

But, you also were positive on blood work. Do you know which tests? Most Celiac tests are very specific for Celiac antibodies, and if you come up + plus a positive endoscopy...well, your dx is probably correct.

You probably notice the problem with fatty foods and the others you mentioned because of your damaged GI system.

I know it's hard ro believe gluten may be your problem if you don't immediately react to it, or equate it with a symptom. That's not unusual. As you are gluten-free longer, you will probably develop glutening symptoms - unfortunately. On the other hand, it will help you believe.

Celiac can be a tough dx if you aren't so sick that you're desperate for a change. The first year can be tough. It's also rewarding as you start to heal and figure out some things you thought were "normal", aren't.

I encourage you to read about Celiac and it's health implications, as well as peruse the boards for others stories. I'm sure you'll find others with symptoms and stories that resonate with you.

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My story may help you find your answer below the lines .

After more than 15 years of suffering, by coincidence I came to know I have B12 deficiency, I started to take supplement for it and gained some energy and started to go out for walk every day and realized things are getting better, but my bloating and few other problems did not work out , I started to exclude gassy foods of my diet likebeans, broccoli, cabbage, sprouts, onions,artichokes, and asparagus,fruits such as pears, apples, and peaches,wheat, Milk,Processed foods containing milk products, Barley ……………., there was no end to it . I was left with rice and very few others to live with. From there onward it took me 6 month to know I am celiac and gluten free and corn free living is way forward for me.biggrin.gif

I am not tested for celiac because when I came to know , I am celiac I was already on gluten freediet for 6 months.

Staying Gluten free is some thing better even if you are NOTceliac, many people enjoy gluten free diet and enjoy it,s benefits.

I think you will get the answer yourself while staying gluten free for 3 month.

Wishing you a speedy recovery.smile.gif

# sorry for spelling or other grammar mistakes, English is not my native language.

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Welcome!

I was diagnosed with bloodwork about 6 months ago. Like you, I never experienced the "classic" celiac symptoms. I was often a bit bloated, and could belch like crazy, but that was it. I was diagnosed when I went to a naturopathic doctor to see if there were anything that I could do to help my chronic seasonal allergies. I have now been gluten and dairy free for 6 months, and my allergies have been better than I can remember. They are still not 100% gone, but I am hoping that once I have healed more, they will get even better.

Since going gluten free, I think that I have accidentally glutened myself twice. Both times, the bloating/belching returned for several days, and my digestive track was just not happy. It is actually hard to really imagine until you experience it.

When I was first diagnosed, I read every book that I could get my hands on. At times it was overwhelming to take in that much information. However, once I was armed with knowledge, I was able to make informed decisions regarding what I needed to do. It is definitely a learning process..

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That's the beauty of celiac. You think you're reacting to everything else but what you are reacting to.

Think of it this way - you just found your tribe. :)

Make sure your thyroid meds are gluten free, as well.

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Thanks everyone for your responses! I think I really needed to hear from some more actual Celiacs.

My labwork from March 2012 is as follows

Gliadin IgA Ab 79 (0-19 reference range)

Tis. Transglut. Ab IgA 225 (0-19 reference range)

I was also tested for the gene and have the DQ2 variant and DQA1*05 allele(not that that says much). I had read on Chicago University's Celiac Disease Center's website that the TTG can be falsey positive for people who have another autoimmune issue (like Hashimoto's) so I always wonder if that bloodtest was falsely positive. But I guess the endoscopy is more reliable and since that was positive, then I really have no reason to doubt it.

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I can definitely understand where you are coming from when the diagnosis is a complete shock. I was able to eat pasta, pizza, bread without any issues at all. Like you, I never had GI symptoms pre-diagnosis and the only symptoms I ever struggled with were anemia, acid-reflux, and some chest pain/burning from time to time. I thought these issues were unrelated and tried to manage them on my own. No one in my family had gluten issues and I was NOT underweight, in fact I was gaining weight steadily and couldn't seem to get the weight off no matter how much I tried to diet or exercise. A few days of stomach pains at night and one not so normal colored bowel movement landed me in the GI's office just to make sure everything was ok. She thought my red stools were due to a cherry slushie that I had the day before but figured she'd run some blood tests anyway. I got a call two days later, on May 3, 2012, at work thinking I would hear that everything was ok and to lay off of slushies for a while. Instead I heard, "Laura, your tests came back positive for Celiac disease." My TTG levels were above 100 and they were supposed to be lower than 3 (I think), so the diagnosis was confirmed. I was told to go gluten free that day (not knowing what the hell that meant) and my endoscopy was scheduled for several weeks later. Even though I went gluten free, it still showed blunted villi.

I was scared, confused, and shocked that I apparently had Celiac for quite some time and never knew. It was overwhelming and I wasn't sure where to start. During my first week after the diagnosis I remember thinking to myself that I had two choices - either mentally fight this because it didn't make sense, or accept this diagnosis and begin do whats right for my body. I chose the latter, got myself a dietician who is extremely knowledgeable about Celiac, starting reading any information that I could get my hands on, and began my journey...

Although I NEVER reacted to gluten foods prior to my diagnosis, since going gluten-free, my body has changed and is now able to react to tell me that I've eaten something it "doesn't like." Now when I get exposed to gluten, my stomach bloats until I look like I'm 8 months pregnant, I get horrible abdominal pains, joints swell up and stiffen, and I have horrible mood swings. Even though I had accepted the diagnosis, THIS confirms for me that I do have Celiac disease and I am now thankful that my doctor was diligent enough to test for it. If she didn't, I would still be unknowingly poisoning my body and would become even sicker in the future.

Yes, this is difficult for all of us to wrap our minds around - if you read the forum, each of us have different symptoms and varying levels of complications from this disease. The silver lining is that we CAN treat it, and we can feel better...I am so thankful for everyone on the forum who lends their suggestions and support, without it I think I'd still be scared and confused.

You had BOTH positive blood work and a positive endoscopy - having both is considered a "done deal" amongst us here. My suggestion to you is accept it for what it is - I feel the more you question it, the more difficult it will be for you. Constantly questioning something, especially your medical health can put a ton of stress on you which you don't need. There are a ton of people on here who I consider to be experts, even more so than my doctors, and its been incredibly helpful. Feel free to vent, ask questions, and share your experiences with us. I will definitely keep you in my thoughts. Best wishes!

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Thanks everyone for your responses! I think I really needed to hear from some more actual Celiacs.

My labwork from March 2012 is as follows

Gliadin IgA Ab 79 (0-19 reference range)

Tis. Transglut. Ab IgA 225 (0-19 reference range)

I was also tested for the gene and have the DQ2 variant and DQA1*05 allele(not that that says much). I had read on Chicago University's Celiac Disease Center's website that the TTG can be falsey positive for people who have another autoimmune issue (like Hashimoto's) so I always wonder if that bloodtest was falsely positive. But I guess the endoscopy is more reliable and since that was positive, then I really have no reason to doubt it.

The combination of tests says more than any of the tests by themselves. With the Tissue transglutaminase antibodies (your body attacking itself), AND the anti-gliadin antibodies (your body attacking gliadin, the specific amino acid chain that causes the most damage in celiac), AND the Marsh 3 score on your biopsy, you are certainly celiac.

Celiac and autoimmune thyroid go very closely hand-in-hand. Some suggest that gluten intolerance might actually cause the autoimmune thyroid.

Hopefully you'll find the knowledge here that will help you feel confident in going forward with a healthy diet plan, and you'll be feeling truly well in a very short time!

You might want to get your children tested. Since you didn't seem to have a lot of obvious symptoms, your kids might develop celiac with few symptoms as well. Celiac IS genetic. Not to say everyone with celiac genes gets the disease, but the susceptibility is there.

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While Hashis could cause elevated ttg, the Gliadin test is specific for celiac, and yours is quite positive. You could be diagnosed on that alone. Combined with your endoscopy, there is no doubt you have it.

As for not thinking you react to gluten...just give it time. I was un-dx celiac for 30 years and seemed to have no rhyme or reason to my reactions- sure didn't seem to be gluten tho! After several months gluten free tho, it became clear that gluten was the problem as I would react swiftly and violently to even tiny amounts. When you have celiac, your immune system gets so wore down that it can't muster a strong reaction some times. You just have ongoing, low grade crappiness. Once you remove gluten, your immune system strengthens, and makes it loud and clear that gluten is BAD!

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When I have my boys tested, what should I have them checked for? They are 4, 2, and 1. Should we hold off on te 1 year old? Should we check for the genes and the same bloodwork I was checked for? I can't imagine putting them through an endoscopy right now, so could I just DX them based on labwork?

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When I have my boys tested, what should I have them checked for? They are 4, 2, and 1. Should we hold off on te 1 year old? Should we check for the genes and the same bloodwork I was checked for? I can't imagine putting them through an endoscopy right now, so could I just DX them based on labwork?

I suggest going to the parents section and reading. Lots of stories there.

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Hi Scarlett,

Most people with celiac disease (over 90%) don't know they have it. It is largely undiagnosed. Or diagnosed as some other condition. There is long list of related conditions that people with crliac tend to be more prone to getting than other people, autoimmune diseases. The link has more info. Hashimoto's thyroiditis is one of them. There are several members who have Hashi's. Some people who have celiac disease have no symptoms at all, and they are termed silent celiacs. Other people get only symptoms from some other part of the body besides the gut. So people go to the doctor to get tested for arthritis or fibromyalgia or a skin rash (DH) and get diagnosed with celiac disease. If they are lucky and their doctor is on the ball. If not they get diagnosed with something else and mistreated for years.

The bad thing about not being diagnosed and following the gluten-free diet is that people tend to develop additional autoimmune diseases as the years pass. You can see that in some of the signatures of people on the forum. the ongoing damage from celiac can raise havoc in your body as time passes. And there is no guarantee that all symptoms go away once you stop eating gluten. Sometimes the damage is permanent and not healable.

Enough of the scared straight talk though! :) Going gluten-free seems to be hardest for people when they are first starting on the gluten-free diet. It is confusing and hard to figure out what is safe to eat. That's why we often suggest going with whole foods cooked at home. You know the ingredients since you make the food yourself and can control what you are eating. Plus you don't need to spend time reading long lists of ingredients on processed foods at the grocery store wondering if they are safe. Foods like meats, veggies, nuts, and fruits are naturally gluten-free. Nuts you have to read the label on though as they sometimes add wheat or other gluten to them. Planters brand will always label if gluten is present. We need to avoid wheat, barley, rye and sometimes people react to oats also.

Celiac Disease Research: Associated Diseases and Disorders

You can find other lists by searching on celiac related condition or celiac associated disease.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.nature.co...jg2012236a.html

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My experience was the opposite of yours. I had some intestinal symptoms and suspected gluten intolerance or celiac for a year or so before actually getting tested. When I got my positive diagnosis (through blood work only) it was almost a confirmation of what I suspected. I was recently diagnosed with Hashimoto's too, which I didn't expect at all since so many of the symptoms ae the same as celiac.

It takes a while to accept the unexpected, but I think, and hope, you'll be pleasantly surprised how simple a celiac diet becomes after a couple of months. Once you get rid of the hidden sources of gluten in your home (like vitamins with gluten, soy sauce, worchestershire sauce, teriyaki, and basalmic vinegar) it gets pretty easy to cook gluten-free. Plus, I've heard some people with Hashi's often improve on a gluten-free diet, although I have no experince in this... yet.

Kids can often have a false negative test for celiac while they are young, so if your kids continue to eat a diet with gluten, you'll have to get them tested periodically and be on the lookout for symptoms of celiac. I had my kids (ages 9,7,5) tested and they all had negative tests for celiac but we are still putting them on a gluten-free diet. It will make cooking easier for me, and they will have a healthier diet without the chance that I am risking their health, development and growth. Since your kids are so young, it will be simpler to switch them gluten-free now before they become too used to the taste and texture of gluten, if that is the route you choose to go.

Sorry to hear of your diagnosis but I wish you improved health and lots of luck with your new diet. Best wishes.

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You certainly have Celiac Disease for all the reasons the others have posted. Welcome to the club - while it is quite tough at first, it does get much easier with time. Feel free to ask questions here or just pop in to whine or complain - we all have a time or two ;)

For your kids - I'd say get full celiac panel on all of them - they may all be negative, but even that can be used as a baseline - if they are positive I'd remove gluten without putting them thru and endo because that can be falsely negative for a lot of reasons in children. So given you certainly have it if they test positive, they have Celiac Disease - far better to know at an early age as the damage that Celiac can do varies greatly - it may have contributed to your developing Hashi's. You can decide later how often you want them to be re-tested, for now just get the starting data.

You might want to have them genetically tested because if I am understanding your test correctly, you had single DQ2. Because I have a pair of DQ2 - all of my children carry the gene. It is possible that your kids don't carry the gene. That being said there are cases of Celiac Disease that do not have the genes commonly referred to as the celiac genes - so unfortunately lacking the genes is not a reason to rule out Celiac Disease, it just gives another piece to the puzzle.

There are many symptoms of Celiac Disease that are not digestive - educate yourself as to what they are so that you can recognize them if they pop up in your children. I'd guess that you will notice some changes for yourself in the coming months. When I first went gluten free my hair, skin and nails all changed for the better and I thought I had great hair, skin and nails before I was dx'd.

Hang in there...the learning curve is tough, but the effort brings health with a change in diet rather than medications or more invasive medical treatments!

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Hi, welcome.

A couple of things: celiac disease can be triggered in people with the right genetic profile. Pregnancy is a common trigger.

The reason you're feeling better after cutting out gassy/fatty foods is that they're difficult to digest. When your intestines are damaged, like yours are, they get really difficult to digest. The good news is, once you're gluten free long enough, your intestines will heal and you'll be able to add all those foods back into your diet without the bad side effects. Not being able to eat them right now is simply a symptom of the disease.

And yes, your tests and symptoms are overwhelmingly conclusive for celiac disease.

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Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
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